Today’s patient has a loud and strong voice. At PatientsLikeMe, we hear you. You’re saying, “I know this disease, I know how it acts in the real-world, and it’s time to share that with others.” With thousands of patients sharing data and experiences every day on our site, we’ve decided to launch a report that… Continue reading Introducing “The Patient Voice” – First up? Inpatient Therapy
Tag: PatientsLikeMe
Fibromyalgia Awareness Day 2009
Did you know that yesterday was Fibromyalgia Awareness Day? The PatientsLikeMe Fibromyalgia community is growing exponentially with more than 3400+ members just five months after its launch! Many of our members are feeling newly empowered by their membership in our community and are attending events, wearing pins and ribbons and taking the time to spread… Continue reading Fibromyalgia Awareness Day 2009
PatientsLikeMe at 2009 Parkinson’s Unity Walk
PatientsLikeMe was once again a proud sponsor of the 15th Annual Parkinson’s Unity Walk, held in New York City on Saturday April 25, 2009. On a gorgeous but hot day in Central Park, Jeana Frost, James Kebinger and I (Maureen Oakes) joined thousands of walkers and sponsors in raising more than $1.2 million for Parkinson’s… Continue reading PatientsLikeMe at 2009 Parkinson’s Unity Walk
PatientsLikeMe Offers Adverse Event Reporting for MS Patients
PatientsLikeMe is proud to announce a pilot program in our multiple sclerosis community which helps patients submit treatment-related adverse events directly to the The U.S. Food and Drug Administration (FDA) through our site. “Adverse events” are severe side effects or events that occur as a result of using a medication, medical product or device. Understanding… Continue reading PatientsLikeMe Offers Adverse Event Reporting for MS Patients
Sharing to Feel Better
Sharing. It’s a concept we all learn at a very young age. Oftentimes reminisced as happening in the sandbox, we think back to our young selves giving up what we hold most dear (in this case, some cheap plastic toy) to allow someone else to benefit from it. It seems so simple and obvious, but… Continue reading Sharing to Feel Better
Announcing the PatientsLikeMe ALS Genetics Search Engine
This month marks the 3-year anniversary of our flagship ALS community. While there have been so many exciting milestones we’ve reached in that time, we’re always looking at ways to bring new insight to this disease. Today, we’re announcing the launch of our Genetics Search Engine for people with ALS. Imagine finding other patients just… Continue reading Announcing the PatientsLikeMe ALS Genetics Search Engine
Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary
Did you know this April is both Parkinson’s Awareness Month and the 2-year anniversary of the PatientsLikeMe Parkinson’s community? We invite you to celebrate with us all month as we share real-world patient insights and experiences of living with this disease…and we ask you to share on! The PatientsLikeMe Parkinson’s community has come a long… Continue reading Share On: Parkinson’s Awareness Month and PatientsLikeMe PD Community Anniversary
Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
In a recent blog post by New York Times’ Tara Parker-Pope, PsychCentral highlights “The 12 Most Annoying Habits of Therapists.” Launched a year ago this week, our very own Mood community has more than 1,300 patients using “Individual Therapy” as a treatment for their condition. We asked them to tell us some of the habits… Continue reading Annoyed or Impressed By Your Therapist? PatientsLikeMe Mood Members Chime In
Happy 1st Anniversary Mood Community!
A year ago today, PatientsLikeMe launched our combined Mood community for patients with depression, anxiety, bipolar, obesessive-compulsive disorder and post-traumatic stress disorder. It was first announced to the world in Thomas Goetz’s article, Practicing Patients, featured in New York Times Magazine. Since then, more than 8,700 patients have joined the community, sharing detailed information about… Continue reading Happy 1st Anniversary Mood Community!
A new gene for ALS: What sharing your genetics could mean for research
In today’s issue of the journal Science two papers describe the discovery of a new gene for ALS (you can read the abstracts here and here). Around 90% of ALS cases are sporadic, i.e. we don’t know what causes them, but for 5-10% of patients the disease runs in their family (known as familial ALS,… Continue reading A new gene for ALS: What sharing your genetics could mean for research